Ethical Foundations of Palliative Care for Alzheimer Disease

EIGHT: The Moral Self as Patient

mc h a  t e r e i g h t The Moral Self as Patient Judith Lee Kissell, Ph.D. Our health care successes over the last few decades now confront us with the necessity of rethinking our model of medicine, our health care policy , and our medical ethics. We have lengthened life and prevented and controlled disease. But our mastery also presents us with the problems of elderly persons who, while they survive what might once have killed them at a younger age, now live with chronic diseases, often those of dementia. With our achievements , we have produced a growing populace of family caregivers, many of them old themselves. For these and other reasons, ethicists and clinicians are looking more and more to the issues of palliative care. But concern for caregivers and the problems that accompany diseases of dementia—notable among them, Alzheimer disease—are merely symptomatic of a far more serious disorder that afflicts medical ethics and policy. The hospice movement, as one element of palliative care, is sensitive to patient , family members, and friends impacted by an illness. Because of their experience in working with the dying, often in the patients’ homes, hospice has long recognized responsibility—officially and explicitly—not only for the patient but also for the family. On its face, this approach seems to challenge the hegemony of patient autonomy so present in other areas of health care. At the same time, no theoretical basis for hospice’s nonconformist responsibility for patient and family has been forthcoming. As more elderly patients live longer and more family members become caught up in caregiving and decision making about end-of-life care, autonomy seems a less and less adequate response to the decisions that confront families, caregivers, and society. The literature on decision making at the end of life is telling. A few typical titles give us the drift: “What Is the Moral Authority of Family Members to Act as Surrogates for Incompetent Patients?” (Brock, 1996); “Choosing for Others as Continuing a Life Story: The Problem of Personal Identity Revisited” (Blustein, 1999);“Alzheimer Disease and the‘Then’Self”(Post,1995).At one level,the problem that these articles raise is about the patient’s right to make decisions: how does self-determination play out for persons suffering from dementia? At another level, the problem is about the moral subject: Who is she? How does she relate to the rest of us and we to her? The matters with which the above articles are concerned are about whether the personhood, or selfhood, of patients such as Alzheimer disease (AD) patients extends beyond competence. But this query into personal identity fails to probe in the right place. The more appropriate question is not a procedural one about decision making; nor is it a functional one about whether personhood or selfhood remains when the patient can no longer make rational decisions, communicate well, or relate to others. Rather, the issue is about how we live together, relate to and care for one another, in the midst of suffering. Procedural approaches to decision making for these patients come to substitute for profound reflection on issues critical both to patient and to family caregivers . A psychological, functional analysis of the incompetent person’s identity is both aberrant and facile. On the one hand, both the procedural approach and a functional view of personhood seek to answer a clinical question—one that the principle of autonomy and the political theory of “self-governance,” introduced by Tom L. Beauchamp and James F. Childress (1994), are not equipped to handle . On the other hand, these approaches are far from the philosophical anthropology that we need to tell us more about the patient and the communities in which she lives. The unconventional attitude of hospice toward the patient and his or her family suggests a new way to think about caring and decision making. For various reasons, we in the Western world have structured our medical ethics, and much of our public policy, on notions of liberal philosophy. We have asked only superficially whether this approach reflects reality, not confronting this question 132 Philosophical and Theological Explorations seriously enough. Michael Sandel helps us to perform just this task in his Liberalism and the Limits of Justice (1982). In this book, he teases out of John Rawls’s A Theory of Justice (1971) an analysis...